Monday, May 22, 2017

Week 196: Not a sprint

If CF prepares you for anything, it's being unafraid of the dentist. Lemon was very excited to go for his cleaning because there are toys in the waiting room, and prizes after. He walked right in to the exam room, and got on the table. He very capably advocated for which tool he wanted the hygienist to use to clean his teeth (traditional metal, please, none of this high-pressure water business), and told her when he needed breaks. It turns out eating food actually helps keep your teeth clean, so Lemon had some extra buildup on his teeth due to his preference for not eating, but otherwise everything was fine.

If only CF prepared one for cows. The day after our highly successful dentist visit, Lemon's school had a field trip to a local dairy farm. It started off well enough. Lemon was very excited about riding on the school bus. He was even moderately (if briefly) excited about seeing the baby calves. He was emphatically not interested in feeding any of them from a bottle. He was even more emphatically uninterested in the barn where the cows were hanging out. So emphatically, in fact, that we had to leave the barn and stand outside were we could see the more interesting aspects of the farm (tractors, dump trucks full of hay, front end loader, ATV). The milking parlor was also pretty much a non-starter. He did eat a piece of string cheese at the end of the visit, though, which was reassuring--I was worried that the whole experience might have put him off dairy permanently.

On Saturday night, after the kids were asleep, I slipped out of the house and headed down to Rockford, IL, where I ran a marathon early Sunday morning. It was a great day for it and I set a new personal record, 4:07. I still aspire to get under 4:00 some day, but I put everything I had into the race on Sunday and I'm proud of the result. Honestly I'm looking forward to running a little less for the next couple of weeks and spending time on some much-needed upkeep around the house and the yard. But, don't worry, the next race is already on the schedule for October, so I won't be slacking off for too long.

At long last on Wednesday morning I'll be taking Lemon for his feeding evaluation. Eating has definitely been a bit up and down the last few weeks. Sometimes, he'll have a stretch of days where he eats "so much" (multiple bites multiple times a day) where I wonder if we still need the therapy. And then he'll have other days or weeks where I'm reminded that yes, we really do still need this. I think we're at the point where he's getting maybe 10-15% of his daily calories by mouth, which certainly feels like a big jump from the 0-5% we were getting for some of the winter, but it's not nearly at our goal of 50%.

After some discussion, we've decided to keep going with Cayston for one more week. We'd been hoping to stop after 14 days, but we knew we could only do that if Lemon was really 100% at baseline. And, he's just not. It's impossible to tell if it's still an infection, or if it's just allergies now, or what, which is frustrating. He's definitely much closer to baseline than when we started the Cayston, so I do think it was the right thing to do it. I just wish I knew when it would be OK to stop--with the high pollen counts right now, Lemon could be coughing from allergies for weeks (if past experience is any indication). Treatment is still such an inexact science. So, we'll just carry on for another week and then use our best judgement and hope that we got it right!

Monday, May 15, 2017

Week 195: Mother's day

We had some special out-of-town visitors to help us celebrate Mother's Day this year, namely Uncle Jared and Auntie Lauren. The kids were beyond thrilled to see them. So thrilled, in fact, that they both were essentially unable to sleep between Saturday morning and Sunday afternoon. That is one way to make the most out of a a short visit, I suppose. We didn't even do anything objectively exciting. We went on walks, played around the house and in the yard, and ate various meals, including of course Mother's Day brunch (featuring a rhubarb pie made with rhubarb from our back yard!).

A major highlight of the visit was that on one of our walks, we went to a yard sale and acquired numerous "new" toy vehicles. These new acquisitions may have contributed to the inability of various people to sleep effectively. One of these vehicles is a real gem, an old metal Tonka pickup truck carrying a camper with a door that opens. When I picked it up, the guy selling it was very skeptical about letting me take it, and explained to me (while eyeing Lemon and Lime with deep suspicion) that this was a valuable collector's item in excellent condition and was worth way more than the price he was charging for it, etc. I hope he will take some solace in the fact that the kids love it. Toys are meant to be played with, right?

In any case, we enjoyed a wonderful if too-brief visit and even managed to get a semi-decent family portrait.

The latest round of Cayston seems to be working. Lemon's cough has mostly dried up, so I'm hopeful that we will be able to stop after 14 days. We've gotten more used to adding the third therapy session in the middle of the day, so it doesn't feel quite as disruptive as it did before, but with the weather being nice now it does seem like a shame to keep Lemon indoors for an extra 45 minutes a day.

Many of you may remember that a few months ago I engaged with the CF Foundation to develop some scientific content for their website. I'm happy to report that, after a few logistical hiccups, that project is finally getting off the ground and I hope to have some content to share with you soon. It's funny that I'm more nervous about the draft that I've produced for them than I am about the myriad things that I write every day for my "day job." I really want this piece to be the first of many that I do for them, so a lot hangs on it. The deadline is approaching, though, so pretty soon now I'm going to have to stop fiddling around with it and send it in!

Monday, May 8, 2017

Week 194: Plane home you

I'm glad to report that I left the state for two nights and everyone survived to tell the tale. It makes me think I should go away more often, but only if it involves something other than a professionally mediated conversation with my coworkers about our respective personalities (don't ask). In any event, I definitely enjoyed the trip and the feeling of freedom that came with being responsible only for myself for a couple of days. It seemed like the males of the family were glad to have me back, though. In fact, Lime came the closest he ever has to uttering a sentence. When I came into his room the morning after I got back (I'd arrived after he was already asleep), I pulled him out of his crib and as we were sitting in the still-dark living room, he said "Plane. Home. You!" which does capture the scenario pretty accurately.

Papa Bear and I also enjoyed a little kid-free time together this weekend, taking part in our annual Great Strides walk. Thanks so much to all of you who donated--we ended up being the #4 team at our walk this year, which is a nice accomplishment, although as I say every year, _next_ year will be the year that I actually get serious about fund raising. Some day I will have more free time, right? I think I've been saying that about every year since I was a sophomore in college. But I continue to be optimistic.

In case we needed a further reminder that May is CF awareness month, today we decided to bite the bullet and start another course of Cayston. Lemon is still really well, which is the puzzle of this cold. He's not coughing much if at all at night, and he doesn't have a runny nose or sneezing either. But there's this lingering cough. Not too frequent, maybe a couple of times a day, but it's a productive cough and it's certainly not his baseline. And we seem to be kind of stuck there, despite our best efforts with increasing his treatment to 3 times per day. So, I reached out to his nurse practitioner today, and she agreed that it sounded like time to start up the Cayston again. Hopefully since he's not that sick, we'll be able to get away with just 14 days this time.

We did have one little advance, though, which I'm excited about. When I was unpacking a set of new nebulizer cups (they need to be replaced every 6 months or so), Lemon started asking me about the mouthpiece that came in the package. I explained to him that that was what grownups used to do their treatments, instead of the mask, and that got the idea in his head that he wanted to do it that way, too. The Cayston provides a great avenue to learn how to do the mouthpiece, since the treatment time is so short. So, when the time came to do the first Cayston treatment today, I gave Lemon the nebulizer with the mouthpiece attached and he pretty much ran with it. I feel like he gets a lot more of the medication into his lungs that way, since there isn't all the leakage like there is around the edges of the mask. It certainly says something about your perspective as a parent when you're remarking to yourself "Oh, he's growing up so fast" because he's able to do his nebulizer treatments like a grown up.

But, in more typical and exciting parenting news, look who got his first real two-wheeler bicycle!

Monday, May 1, 2017

Week 193: Don't draw on the floor with ice cream

We've had a few unseasonably cold days of late, as if to remind us that spring is not an absolute, but rather a transition. And that unseasonably cold weather has been accompanied in our household by a spring cold. At first, we thought/hoped that both kids were just struggling with allergies a bit more than usual, but over a few days it became clear that there was something else going on. As is now typical in our house, Lime has a runny nose and a bit of a cough, but is feeling fine and eating everything in sight. Lemon, of course, has much more of a cough, especially at night. As we were reminded in dramatic fashion on Thursday night, night-time coughing and night-time tube feeds are not compatible. So, we've had to dial back from our usual 3 cartons of formula a night to one. That, in turn, has had the inevitable consequence of weight loss. It is still amazing to me how fast Lemon loses weight. He normally weighs about 38 lb now, and as a result of cutting back his tube feeds for 4 nights, he lost almost 2.5 pounds. Just like that. Poof. Gone. Some of that was surely water weight, but some of it wasn't, and now we will once again have to fight our way back to where we were before, once this cold is over.

What is interesting about this cold (although I am afraid of jinxing it by writing this) is that I am starting to become optimistic that we may kick it without resorting to antibiotics. We increased his airway clearance therapy to 3 times per day instead of two, and went up on Flonase as well. And, gradually, the cough seems to be getting less and less frequent. I'm sure things could change again at any minute, but for the moment I'll just say that I'm grateful that he hasn't had to miss any school, and that we can at least have this bit of hope that we won't need to go to antibiotics every single time he gets a cold.

Another thing we've noticed with this cold is that Lemon's behavior has been kind of off the hook. Probably still within the normal range of behavior for a 3 year old boy, but rather to one end of the continuum. I kind of think it's because he's hungry all the time, but it's hard to say. We've done our best to offer all kinds of tasty things in the hope of getting him to eat by mouth during the day some of the calories that he isn't getting through the tube at night. For instance, we offered him chocolate ice cream, which he generally likes. But, this time, he decided to use it to make a mural. With his feet. On the kitchen floor. In about 0.74 seconds. Anyhow.

Early tomorrow morning, I will depart for a two-day trip to Denver, my first two consecutive nights with no children in about 3 years. I'm a little nervous about it but I'm sure the boys will be fine. Papa Bear has the Domino's Pizza number at the ready, and knows the boys' routine inside out and backwards. The rest of our care team is standing by to help make sure things stay more or less on the rails. With any luck, I'll come home Thursday night to a couple of boys who have kicked this spring cold, and a husband who doesn't try to make a break for it the second I walk in the door. In the mean time, I'm looking forward to seeing my coworkers in person, having some grown-up conversation, and getting a couple of nights uninterrupted sleep. Who knows, I may even get to go running in the mornings--now, that would be truly decadent.

Monday, April 24, 2017

Week 192: Keeping up

Now that we've had the G-tube for just over a year, it pretty much runs in the background. For a long time, as we were all getting used to it, every night had the potential for G-tube-related drama, but now we forget that there can even be such a thing. Of course, as soon as you set something on the back burner, it finds a way to remind you of its existence. Case in point being Thursday night, when Lemon was doing naked back-flips off of the couch after his bath, as one does, and somehow caught the edge of the button on some part of the couch and pulled the button right out of his belly. You would think that ripping something out of your belly to reveal a hole that shouldn't be there would be upsetting, but no. Lemon was way more upset about the fact that he had to stop doing back-flips and hold still so that I could put his new tube in than the fact that he'd ripped the old one out. 
On Saturday, while so many of you were out marching for science, I decided to forgo the marching and instead attend our clinic's annual family education day. One of the great highlights was getting to see some of my fellow CF mamas, whom I see way to rarely. In fact, while we were there we were trying to figure out how many times we'd actually seen each other in person after knowing each other for two years. It may be as many as 4 times. And, there was that one time where we went out to lunch together. Once in two years. We're aiming for another lunch in June some time--it's good to set ambitious goals!

Another great experience of the family day was the chance to meet an adult with CF. Thanks to all the advances in CF care (yay science!), more than half of CF patients are now over 18, but the adult CF community and the community of parents of kids with CF seem to be very separate. It was great to get to meet someone in his 30's with CF who is living life to the fullest--career, family, and a passion for running and cycling (he's a faster marathoner than I am), and to be reminded that this kind of future is out there for Lemon too as long as we do everything we can now to give him the best starting point for it.

One really interesting thing I learned from this guy is that in his opinion, manual chest PT is better than the vest. I'd actually heard and read that elsewhere before, but I hadn't really thought about it to deeply. It will be interesting to see as Lemon grows and becomes more able to express what he perceives about his care which therapies he finds work best for him. In the more immediate sense, though, it got me thinking about our travel plans for this summer. We have been trying to figure out how to fly with the vest, since it is too big to fit into the overhead bins of most of the airplanes that fly from our local airport. 

Talking to this adult with CF and hearing his opinion about manual PT made me think--I have to take my hands with me on this trip no matter what. Could we just leave the vest behind? After relying on it pretty much exclusively for almost 2 years, that seems like a daunting prospect. But, on the other hand, it would simplify things so much--imagine if we had to get through security and onto the plane with "only" two children under the age of 4, 1 car seat, 1 giant bag of medicine and food, and all the other assorted accessories, but we didn't have to bring the too-big roll-aboard and then try to negotiate with the airline people to find a spot for it on the plane? 

I have a trip for work coming up in 10 days (two nights with no kids for the first time in 3 years!), but once I'm back I think Lemon and I will start practicing our manual PT technique to see if this is a realistic possibility for us. We'll have to learn some new approaches, since the last time I did manual PT with him he was small enough to do it on my lap--not so anymore!

Monday, April 17, 2017

Week 191: Eat it up

Spring in Wisconsin really is an event. One moment, everything is sort of wet and gray, and the next moment, color bursts forth everywhere, and scantily clad Badgers emerge from their lairs to enjoy the sun. The air has so much pollen in it that it almost has a texture. Thankfully I feel like now, on our third spring here, we finally have a handle on Lemon's seasonal allergies. We're doing Zyrtec twice a day (up from our usual once), Flonase once a day, and running the air purifier whenever he's asleep. So far, so good.

One thing that I noticed this week is that after months of eating basically nothing, Lemon has actually started eating some food. Nothing that you would get excited about if you didn't know his history, but you do, so you will be excited too--on Saturday night at dinner he ate 3 pieces of bow-tie pasta. That is probably more pasta than he has eaten in the last year combined. And, on Easter morning, he ate two Reese's peanut butter eggs. I really do wonder if it's seasonal--maybe he's hungrier because he's outside running around like a madman all day? Or just feeling especially chipper with the nice weather? Whatever it is, I'll take it. Mainly, I'm just hoping that we can capitalize on this extra little bit of willingness when we start feeding therapy next month. If he's somehow in a more receptive mood towards food at the moment, and we do therapy at the same time, maybe we'll really get some traction. A mom can hope, right?

I'm certainly feeling a little more chipper, if for no other reason than that Lime has done me the favor of staying in bed until after 5 a.m. for a week straight--taking his favorite truck to bed with him seems to help. I realize intellectually that the difference between 5:05 and 4:45 is only 20 minutes, but my brain seems to be pretty firmly hard-wired that any a.m. time that begins with a "4" is night, whereas "5" is early but definitely morning. So, 5:05 seems survivable. Lime has also come up with a new game that we can play together at that hour that he finds totally hilarious. It goes like this: Lime points out the (completely dark, pitch black) window in our living room and says "Plane!" and I say, "Really? Do you see a plane?" and he says "Nope!" And then he cracks up. Then we pause for a second. Then he points out the window and says "Moon!" and I say, "Really? Do you see the moon?" And he says "Nope!" And then he cracks up. Then we pause for a second. Then he points out the window and says "Truck!" and before you know it, it's 5:45 and time to get the rest of the family mobilized.

Speaking of before you know it, our annual Great Strides fundraising walk is just a few weeks away. Many of you have already made incredibly generous donations (thank you!!!!). Those of you who haven't done so yet can join the illustrious company of those who have by clicking right here, right now.  And, once you've done that, you can enjoy this video of Lemon, who, having mastered street luge, has moved on to "lawn luge..."

Monday, April 10, 2017

week 190: Sticking with the plan

I'm not going to lie, I'm tired tonight. I ran a half marathon on Saturday, which went really well--I knocked 7 minutes of my time from September. I'm continuing to love the small town races in Wisconsin--the "crowds" (tens of people, I tell you!) are awesome, and the races are gorgeous. Long, beautiful country roads through farmland. But, racing takes its toll. My legs feel great but it definitely took a lot of energy to put together those miles. That, and for the past couple of weeks, Lime has been waking up at 4-4:30 a.m. every day, for no obvious reason. It's pitch dark and dead quiet. He's not hungry. He's still tired. Teeth? Internal clock malfunction? Who knows, I just hope it stops soon. We did a lot of fun stuff this week--proof in the photos, not the words!